I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!

Chronically Ill

As I write this, I am lying in my hospital bed - for the third time in under 3 months.  And let me tell you, it doesn't get any easier no matter how often you come to hospital.  I still get butterflies in my tummy when I know I am coming here & dread the idea of more time away from "normality".  I am back for more plasmapheresis, & although I love feeling so much stronger, I HATE having to be admitted again & the fact that I cannot function as a normal person.

When you first get diagnosed with a chronic illness & have to go to hospital; you get visitors every day - flowers, cards, messages & phone calls.  After a while these begin to dwindle (understandable as it seems to be a frequent occurrence) & after 12 years it is pretty much non-existent.  We don't expect people to fawn over us & act like we are dying every time we have to be admitted, but please do understand that coming to hospital is never something we would choose to do.  It is not a fun place to be.  We know what is going to happen & the pain that will most probably accompany our stay.  We know what it is like to be away from our family & friends; & we still get nervous about coming in. It hurts when family/friends seem blase about our time in hospital or almost don't care.  The days & nights are long here, & every little message or phone call means more than you could ever imagine.  You may not get a response from us straight away, but it gives us renewed hope & our heart becomes slightly fuller thanks to your love & concern.

Being chronically ill means you still try to function as a 'normal' person, & then pay the price for it later.  Our lives have been changed forever & 'normal' for us is now numerous doctors visits; blood tests (& knowing which vein they should use!); finger pricks; & permanent ports.
It means calling your doctor by her first name & having her cell phone number stored for any emergencies; it means knowing more medical terms than some nurses; & it means hours of research into treatment options overseas.
Being chronically ill means you are covered in scars - each one a reminder of a battle you have fought & won.  It means you have had to grow up before your time, but still enjoy acting like a foll every so often.
Having a chronic illness means walking into High Care & having the nurses know you by name; it means never being able to leave the house without your medicine; it means planning for a night away to ensure you are covered in case of any emergency & have the necessary drugs.
Having a chronic illness means your medical savings are finished at least half way through the year - and that's if you have had a good, healthy year!  It also means the pharmacist knowing you by your name & having your medicine ready for you when it is time for your script to be refilled.
Being chronically ill means you have had pipes & tubes inserted into your body to help you function; it means the side effects of your meds leads to you needing to take more medicine; & it means you can't simply take over the counter medication without researching it thoroughly.
Being chronically ill means you most probably know how to connect your own heart monitors by now & can probably even attach your own blood pressure cuff  without a nurse's assistance.
Being chronically ill means you have probably missed your own birthday party; it means you have probably slept through a Christmas lunch with the family & it means you have been called rude at least once in your life - even by your own family.  It means owning more pajamas than normal clothing; & still getting excited when you get given more.
Having a chronic illness means you have to learn to be strong & understand that hurtful words more often than not come from a place of naivety & lack of knowledge.  You will learn that certain people always think that they know better - let them.


It means you know how to smile when all you want to do is cry.  It means you keep your brave face on until you can be alone & let the tears simply flow.  It means you never give up.  No matter what.

Fighting every day to stay alive is not easy & of course there are moments where all you want to do is give up.  Never lose hope.  Surround yourself with happy, supportive people.  And know that you are a warrior.  And you are amazing.